Executive Summary

Key elements of quality care:

1. Respect and promote autonomy1

  • Make the protection of service users’ autonomy a core priority.
  • Facilitate choice and control over major life decisions and not just everyday
    choices, seeking to increase capacity.
  • Make reasonable adjustments to support decision making.

2. Support communication effectively throughout the lifespan2

  • Routinely use, offer and be receptive to alternative forms of communication.
  • Meet the Accessible Information Standard.
  • Provide, facilitate and/or advocate for each service user’s personal ownership
    of and routine access to assistive technology.
  • Have a designated member of staff (preferably a Communication Support Worker) responsible for finding the most appropriate communication systems for individuals.

3. Provide care which is autistic person-centred3

  • Ensure that person-centred care genuinely promotes autonomy.
  • Ensure a minimum of staff variation and match staff to autistic people on
    the basis of shared interests and mutual compatibility whenever possible.
  • Question the intended outcome of programmes and approaches.
  • Plan changes in advance whenever possible.
  • Support and facilitate the development of autistic identity.

4. Tackle environmental and other stressors4

  • Conduct regular sensory reviews of environments focussed on the removal of
    environmental and other stressors as a priority.
  • Provide appropriate sensory adaptation equipment.
  • Prioritise autistic sensory needs including access to safe, appropriate ways
    to meet sensory needs.
  • Facilitate and accept sensory stimulation behaviours (‘stimming’).

5. Remove barriers to access5

  • Ensure prompt and effective access to advocacy.
  • Ensure full involvement in best interests decision-making processes.
  • Recognise the risks of barriers to healthcare, ensure access to
    preventive health checks and screening.
  • Challenge discriminatory treatment of autistic people in health, social
    care and community environments.
  • Facilitate access for autistic people to the full rights of citizenship and rewarding activities to
    contribute to society in ways which are meaningful to them.
  • Ensure equality of access for all autistic people to technology and the internet.

6. Fight stigma and discrimination6

  • Create and sustain a rights-based approach to care.
  • Actively support the right of autistic people to choose where and with whom they live on an equal basis with others in society.
  • Commit to the principle that no autistic person requires long-term institutional care and make real, effective and measurable progress towards all autistic people living in the community.
  • Encourage and promote positive risk taking.
  • Promote a positive and accepting attitude to autistic identity and differences.
  • Discourage assumptions.
  • Recognise and challenge bullying.

7. Recognise behaviour as distress7

  • Treat the use of all forms of restraint as failures and aim for zero restraints.
  • Don’t blame autism. ‘Challenging’ behaviours are not an inevitable consequence of autism.
  • Don’t label people as ‘complex’, seek to understand and empathise with their perspective.
  • Do not remove choice and control from an autistic person.
  • Challenge proposals/decisions to remove an autistic person from their local community.
  • Modify the environment to meet needs, look for underlying causes not just triggers.
  • Work with not against the autistic person – supporting them to manage stress and recover from distress.
  • Avoid focussing on behaviour ‘management’ at the expense of meeting needs.
  • Support autistic people to find practical ways to meet their needs which minimise overall harm to themselves and respect the rights of others.
  • Recognise when service policies, placement environments or particular staff are not the right match for an individual.
  • Identify when stretched public resources are leading to short term decisions which are unlikely to be cost effective in the long term.

8. Ensure better transitions8

  • Take a ‘whole life’ approach: recognising and planning well in advance for transitions throughout the lifespan.
  • Be honest with autistic people about transitions and prepare.
  • Recognise that uncertainty and unpredictability cause stress.

9. Ensure ongoing, practical, autism-specific staff training9

  • Provide regular access to advanced, practical training (‘awareness’ is not enough).
  • Ensure that training is autistic-led and/or autistic-designed rather than merely
    having tokenistic involvement of autistic people.
  • Provide ongoing support and development for staff which embeds relevant learning and encourages positive risk taking and focuses on human rights.
  • Embed respect, appropriate boundaries and empathy for autistic perspectives.

10. Accept difference10 and support positive autistic identity11

  • Avoid imposing ideas of what is ‘normal’.
  • Accept choices to refrain from or withdraw from social interaction and to maintain sameness and routines, while recognising difficulties/barriers to coping with changes.
  • Facilitate access to autistic-controlled space and the wider autistic community.
  • Recognise autism and facilitate access to diagnosis.

 

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